Working towards a world without HIV
HIV is one of the largest killers globally. Since the beginning of the epidemic, the World Health Organisation (WHO) estimates 84.2 million people have been infected with the HIV virus. By 2021, HIV/AIDs had killed 40.1 million people and approximately 38.4 million were infected with HIV worldwide. Globally, an estimated 0.7% of adults aged 15–49 years are living with HIV, although the burden of the epidemic continues to vary considerably between countries and regions. The WHO African Region remains most severely affected, with nearly 3.4% of all adults living with HIV, accounting for more than two-thirds of the PLWH worldwide.
Since the 1980s, treatment progression has been rapid with antiretrovirals leading the way - according to WHO, of the 38.4 million people infected with HIV worldwide in 2021, 75% are receiving an antiretroviral. From the first antiretroviral, AZT (Zidovudine), in 1987 through to HAART (highly active antiretroviral therapy) in the 1990s, the evolution of HIV treatment successfully culminated in 2010 with the development of PrEP (pre-exposure prophylaxis) which, reduces the risk of getting HIV from sex or injection drug use. The success of PrEP was enhanced further in 2021 with the approval of Apretude which is administered by injection from a healthcare provider every 2 months replacing the need for some patients to take oral medication every day. According to HIV.gov, PrEP reduces the risk of getting HIV from sex by about 99% when taken as prescribed.
The fight against stigma
Antiretrovirals have no doubt vastly improved the quality of life and mortality of those PLWH and been instrumental in slowing the spread of infection. But are there barriers to the uptake of treatment that are preventing the reduction of infection further?
At Research Partnership, our own research into the HIV patient journey has found that on the surface, people feel like living with HIV is becoming easier and more routine because medications today are effective with few side effects and are relatively convenient. However, an underlying anxiety about living with HIV still exists - not only because of the long-term health implications but because of the fear of how others continue to perceive them and the condition. Many PLWH feel insecure and ashamed about their HIV, and unable to be as open about their HIV status as they would like, particularly with friends, family or partners. They also report having to conceal their medications for fear of their HIV status being discovered. Certainly, in the patient research we’ve conducted , outside of finding a cure, the highest priority for PLWH is to eliminate the stigma around HIV; to live without judgement or persecution and increase tolerance of PLWH particularly in the non MSM (men who have sex with men) segments outside of major cities. The shame and fear of being discovered as HIV positive demonstrates the stigma that still exists today. Stigma associated with HIV was generated via the trauma and messaging surrounding the early HIV epidemic. The widespread fear of the 1980s left a legacy in which its assumed that HIV-positive individuals contracted the virus as a result of socially unacceptable behaviour such as promiscuity or injection drug use. Sexual orientation, especially homosexuality, was also held responsible.
Sex, shame, and the barriers to PrEP
The stigma associated with HIV is also impacting the uptake of PrEP, which has been slow despite its ability to significantly reduce new infections amongst the highest priority populations. In a published review of the role PrEP-related stigma plays in PrEP access, adherence, and persistence, it is explained that widening gaps in infection rates amongst lower income individuals and people from ethnic minority backgrounds are perpetuated by PrEP related stigma which raises additional barriers to seeking and receiving a prescription amongst these disadvantaged groups who are without easy access to health care. For example, in Kenya, PrEP stigma was identified as the most significant community-level barrier to PrEP implementation across the target population.
Furthermore, PrEP stigma is generated by virtue of what PrEP does i.e. enabling people to have condomless sex whilst still providing protection from HIV infection. Potential users are put off by using PrEP because it is associated with high-risk sex and thus perceived to be for individuals who are promiscuous.
HIV stigma also serves as a barrier to the uptake of PrEP because it is an HIV medication and is known to be the same medication taken by some HIV-positive individuals, so it is stigmatized by association. Potential and current users report concern that others will think they are HIV positive if they are seen taking PrEP. Worrying that others will think they are HIV positive is worrying that they are being seen in socially discrediting behaviours linked to HIV infection such as promiscuity or high-risk sex, reflecting that at the core of PrEP and HIV stigma lies sexual stigma.
Improving treatment accessibility
Additional barriers to preventing the reduction of HIV infection include limited access to treatment faced by high-risk groups who fail to take the threat of HIV seriously. Our research has found healthcare practitioners struggle to engage with and motivate high risk communities (e.g. drug addicts, sex workers, young people) to take HIV seriously or go for HIV testing.
According to AIDs Action Europe, PrEP is more accessible in urban areas and information campaigns are led by NGOs (non- governmental organization) without sufficient support and as a result services and information target young educated gay, bisexual and other men who have sex with men. Too often, migrants, bisexual men, women, trans people and sex workers are left behind. Access to PrEP is limited to medicalised settings and prescribed by physicians which creates barriers for target groups who are unlikely to visit these settings. These marginalised groups are particularly vulnerable due to their lack of engagement with HIV generally. For example, economic migrants and refugees in France and Germany of North African and Middle Eastern origin face a high degree of stigma related to sexual orientation from their families and wider community and so are not open about the potential risk of HIV. As a result, they won’t go for testing for fear of being seen, having their sexual orientation revealed, in addition to the fear of receiving a positive result and having to tell people about it.
The Terence Higgins Trust, in collaboration with the National Aids Trust, Prepster and National Pharmacy Association explain that in order for PrEP expansion to be maximised it needs to be available through community-based organisations such as pharmacies which are at the frontline of healthcare so that it can access these marginalised groups. In our own research HCPs talk about how they try to connect with at risk individuals via school’s clubs, migrant hostels, areas with illegal drug use etc. In doing so, they try to build a rapport and create a ‘safe space’ to connect with people who may be reluctant to be seen at HIV clinics due to stigma.
The road ahead
The findings from our own research into the HIV patient journey show the leading role stigma has in preventing the reduction of HIV infection by serving as a barrier to treatment, particularly in relation to the uptake of PrEP because of its association with HIV and, by implication, socially discredited sexual behaviour such as promiscuity and drug taking as well as irresponsible condomless sex. We have also seen how less engaged high-risk groups are not being given proper access to HIV treatment because information campaigns are being targeted in areas where they do not live and in settings they are unlikely to attend.
But what does all this mean for the pharmaceutical industry? Decades of pharmaceutical innovation mean that people living with HIV can now expect to live long and healthy lives. Many manufacturers are already working with the communities most vulnerable to HIV to address HIV stigma and discrimination but there is clearly still much more work to be done.
Communications can play a key role in raising awareness among priority groups about the risk of contracting or transmitting HIV and influencing attitudes, beliefs, and perceptions of the virus. Therefore, from a market researchers’ perspective, future work should focus on developing more effective communications. For example, by utilizing segmentation research to confirm attitudinal differences in potential patient segments, pharma can develop better informed segment specific support programs such as specific educational campaigns to overcome stigma in non-MSM communities not based in large cities to demonstrate that HIV is a virus anyone can get. Additionally, communications research can help to develop broader educational campaigns for the general population on the reality of living with HIV today to make it easier for PLWH to disclose their status and better prepare anyone for a future HIV diagnosis.
In all of this though, it is vitally important that pharma listens to the voice of the patient and ensures they are involved in message development as well as the testing and implementation of healthcare communications. Taking into consideration the often-complex HIV patient journey in the development of communications will serve to empower communities that face systemic inequities and promote the action desperately needed to fight stigma, reduce healthcare disparities, and improve patient outcomes.
Focusing future research on improving healthcare communication is just one way the pharmaceutical industry can help in the fight against HIV stigma that exists for all PLWH not just MSM. Moreover, with relevant communication and support programs it can start to address the wider social stigma surrounding sexual desire and expression which is still driving the stigma associated with HIV 40 years on from the start of the epidemic. There’s more to be done, but through effective research, education, and a little more understanding, we’ll get there.